Over 1,000 sign up to help beat dementia in our region

We are celebrating in helping the North East and North Cumbria to pass a key milestone; with over 1000 people volunteering to a service which is boosting recruitment to dementia research studies in the region and beyond.

We are celebrating in helping the North East and North Cumbria to pass a key milestone; with over 1000 people volunteering to a service which is boosting recruitment to dementia research studies in the region and beyond. 

The service, Join Dementia Research, is an online and telephone service that allows people to register their interest in volunteering for dementia research, and matches volunteers with studies that are currently looking for participants.

The 1000 plus volunteers are a mix of people living with dementia, their carers and healthy members of the public who want to help advance dementia research. The volunteers have been vital in helping researchers carry out studies in early diagnosis, prevention and new treatments, but more volunteers are needed.

Derek Delahaye from Teesside, who recently signed up for Join Dementia Research, explained how easy it was and why he signed up:

“Having had a diagnosis of dementia, I signed up because I am interested in what’s going on with me and getting to know more about my condition, also finding out how other people cope, as well as for the researchers to learn from me. I hope that taking part in research will help me and other people who have similar conditions. With these conditions being so widespread, if lots of us take part then the researchers will be able to get lots of information, which can only help us all.”

Helen Robinson, TEWV advanced nurse practitioner, highlights why the service is so important:

“Join Dementia Research has enabled all members of the community, and in particular those who are living with neurodegenerative illnesses, to access research opportunities at any time.

Previously, access to research has been for those in particular services or clinics, or if a particular professional had an interest, but Join Dementia Research ensures that there is equal access and involvement right across our region and beyond. It also enables the participant to be able to think about opportunities and whether they would like to get involved.

My experience has been that most staff and indeed patients would like to think they make a difference or have something to contribute. By signing up to this service, and participating in research, the individual can contribute and remain a valuable part of the community and help to make a real difference to those living with dementia and their carers, both now and in the future.”

There are many studies that take place, from clinical trials of new treatments, to surveys identifying what works in improving the quality of life for people living with dementia and their carers.

One such study in the area is called AD Genetics. Carol Long, TEWV clinical studies officer comments:

“AD Genetics is a national study run by Cardiff University. Since 2004 they have been collecting blood samples and interviewing people to try and understand more about how certain genes affect the likelihood of developing Alzheimer’s disease (AD).  So far over 3000 people have helped with the research and as a result they have been successful in finding many previously unknown genes that are involved in Alzheimer’s disease. They are carrying on this research hoping to discover more genes, and understand the genes involved in more detail. They are now inviting individuals with Early Onset Alzheimer’s Disease to help with this research which will help to search for environmental, biological and genetic factors that influence the progression of Alzheimer’s disease and other neurodegenerative disorders.

TEWV have been recruiting into this study since June 2016 and so far have recruited nine people with early onset dementia and nine family members. The study involves myself and a research assistant visiting the people at their home and carrying out semi-structured interviews and cognitive testing as well as collecting the blood sample. These are people who first developed symptoms before the age of 65 but shortly we are hoping to also look at the genes of people who first displayed symptoms between the ages of 65-70 which will give more people the chance to participate, so we are looking for more volunteers now.”

For further information on this trial you can contact Carol Long, clinical studies officer, by calling 01642 283501 or email carol.long2@nhs.net. Alternatively you can register for Join Dementia Research and if you fit the criteria, a member of the team will get in touch. By signing up you could also find out about other local studies that you may be able to take part in.

Sarah Tweddle, TEWV advanced nurse practitioner, commented on those who have taken part in the region:

“I have a lot of patients who have taken part in research, and some that are taking part in research currently, and they all really enjoying being involved in it and the feeling that it’s part of their care and that they’re in control and are playing an important role in furthering knowledge and care options for those living with dementia.”

It’s really easy to volunteer and help to make a real difference. You can sign up online or call one of the charity helplines listed below to register over the phone. Once registered, volunteers can decide if they would like to participate in the studies they match to on a case-by-case basis, with no obligation.

Alzheimer’s Research UK 0300 111 5 111 (UK wide)

Alzheimer’s Society 0300 222 1122 (England, Wales & Northern Ireland)

Alzheimer Scotland 0808 808 3000 (Scotland)